All medical residents have experience with patients we call "frequent fliers": people with complex illnesses who require frequent hospitalization. Frequent fliers have long lists of medications and an abundance of medical paraphernalia, and their charts are so thick they have to be divided into multiple volumes. When I was a resident, they were the patients who made me mutter one of the seven words you can't say on television when I had to admit them to the hospital.
So it was with one such patient, a little girl who had a rare and devastating genetic condition called trisomy 18. This little girl was deaf, blind, couldn't speak and was bedridden. On average, children with trisomy 18 don't live beyond 2 weeks of age. But for this little girl, medical advances -- oxygen, home ventilators, surgically implanted feeding tubes, liquid nutritional supplements, intensive care medicine and home hospice care -- allowed her family to push her well beyond those limits and keep her alive.
Back then, I was too numb to care about anything more than getting this girl off my service as fast as possible. If there were bigger, more metaphysical issues -- like why her parents chose to keep her alive -- I didn't have much more than a shard of time or energy for them.
It wasn't until last night, when I was reading an editorial in JAMA from 2006 called "Changing Premed Requirements and the Medical Curriculum," that those memories came back to me. The paper's author crisply argued for a more humanistic course of study for aspiring doctors. He recalled an earlier reform, the Flexner Report of 1905, which established new standards for medical education in the U.S., at a time when "many recognized that the old heroic treatments -- purging, bleeding cathartics and proprietary medicines -- were ineffective and dangerous." He went on to say that the practice of undergraduates now spending six semesters of college taking subjects like calculus, physics and organic chemistry, while important, had little value in how doctors care for patients. To sustain a modern medical career, he eloquently stated, aspiring doctors must be steeped in ethics, communication and leadership.
Had I thought about these things a decade ago, I would likely see that little girl with trisomy 18 and her parents very differently.
The author of the paper is Ezekiel J. Emanuel, M.D., Ph.D, oncologist and bioethicist. At the time he wrote the paper, he was the director of bioethics at the National Institutes of Health. Today, he works in the Obama administration. As many readers have heard, Emanuel, the brother of Rahm Emanuel, White House chief of staff, has become a political piñata.
In 1996, Emanuel penned an article for the Hastings Center, a nonpartisan bioethics institution, in which he posed the academic question of why the U.S. has failed to enact universal healthcare. In typical philosophical fashion, he laid out theoretical extremes to examine his proposition of what constituted "good" in a democratic society. In one extreme, he mentioned "not guaranteeing health services to patients with dementia."
Not surprisingly, some of the most vocal and myopic opponents of health reform seized a few phrases in the article and accused Emanuel of providing the philosophical basis for "death panels," the current right-wing delusion about "Obamacare" mandating euthanasia for ailing senior citizens. Sarah Palin warned the country to keep an eye on Emanuel's "Orwellian thinking."
The article is neither Orwellian nor does it support euthanasia. In response to the recent political brouhaha, Emanuel told Michael Scherer of Time, "It is incredible how much one's reputation can be besmirched and taken out of context." In fact, the engagingly philosophical article is only one of many in which Emanuel is creating a storied career of tackling some of the most intellectually and emotionally daunting dilemmas in modern medicine. His impressive collection of work includes some 180 publications over the last decade, works that have investigated and proposed solutions to a host of serious problems. Most of all, he is a sincere and dedicated advocate for patients and their healthcare.
Much of Emanuel's work has explored and increased our understanding of what doctors, patients and their loved ones go through in the final months of life. In a 2004 paper in the Archives of Internal Medicine, he looked at how doctors should speak with caregivers about death and dying -- something none of us are eager to do. Yet he found, contrary to our assumptions, that both doctors and patients could have this kind of discussion in a helpful manner and with less tension than we imagined.
The study that struck me, a pediatrician, is a 2001 study from the Journal of Clinical Oncology that looks at how pediatric cancer specialists managed end-of-life care in children. Emanuel and his co-authors reached a tough conclusion: "Pediatric oncologists reported a lack of formal courses in palliative care, strikingly high reliance on trial and error in learning to care for dying children, and a need for strong role models in this area. The lack of an accessible palliative care team or good pain service was often identified as a barrier to good care."
In a Hastings Center commentary, "Justice and Managed Care," Emanuel considered the hard question of how to use finite healthcare resources in a world where patients and doctors have infinite needs. Above all else, the article demonstrates his commitment to doctors and patients.
"The aim of health care is curing disease, relieving pain and suffering, promoting public health, pursuing research to improve health, and so on," he wrote. He then laid out principles for achieving these goals, ones that strongly support transparency and autonomy for patients, justified by "the necessity of respecting individuals as rational and autonomous moral agents." Contrary to the absurd charge that he (and Obama) would limit care to certain patients to save money, Emanuel argued in the article, "While efficiency is a legitimate and important goal in the provision of health care, it is not the only goal. We also demand that the health care system be just."
For those who would take that last quote to suggest that Emanuel is a socialist who wants to tear down everything we have and adopt single-payer healthcare, wrong again. In a 2008 Hastings article, Emanuel deftly pointed out that it would do little more than maintain the "fragmented, fee-for-service delivery system that provides profligate and bad quality care." Then he showed how single-payer care would hinder integration of care between different doctors and hospitals, how low administrative costs would perpetuate fraud and how cost control would breed public resentment. He even asked how we would feel if Dick Cheney, and not Ted Kennedy, was the one putting political pressure on any government health service. That kind of thinking shows Emanuel's ability to think beyond the politics of health reform and focus on finding workable solutions.
As I said earlier, as a resident, I was too numb to consider much of what Emanuel has been arguing about reform and terminal illness, and how society should best use its resources. Had I read his work then, perhaps instead of muttering curses under my breath when I heard the little girl with trisomy 18 was back in the hospital, I would have had the intellectual and emotional wherewithal to sit down with her parents, understand their wishes and respect their decision to fight on for their only child. Instead, years later, I'm left with a missed opportunity. Still, I'd like to thank Emanuel for making me think about it now.